A caregiver's journey with Alzheimer's

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What Do I Do Now? A Caregiver’s Journey with Alzheimer’s

Alzheimer’s affects the whole family, so the whole family needs to be involved in decisions about care. Sure, that’s just common sense. I’ll make every effort to include Molly’s children. All of them: the three children Molly already had when we met and the three we adopted together from the Philippines.

It sounded simple and straightforward. But that was before I understood that this couldn’t be one-size-fits-all. Each of Molly’s children would react their Mom’s illness and decline in his or her own way. And I’d be jumping through hoops trying to keep everyone happy.

Luckily for me, her daughter Nora (third of the older kids) was easy. Nora’s a doctor; she deals with illness all the time; she is level-headed and warm hearted. She was always ready to say, “I really appreciate what you’re doing for Mom.” When she visited from New Orleans, I went with her and her brother Chris on a tour of the facility. Dr. Nora pronounced it a good place and agreed it was right for her Mom when the time came.

When the time did come, it really hit Nora hard: No denying or equivocating. Her Mom had an untreatable, terminal illness. On the phone, she told me how she was coping, “I clean, and then I cry. Then, I clean some more, and I cry.” I cried, too.

On her next visit, Nora and I went together to pick up Molly and bring her to Chris’s home for a Christmas tree trimming party. We all tried to pretend that it was just the same as last year, except that Molly had to go home early. Molly was somewhat disoriented and definitely incoherent when she spoke. No one commented on it, but we all understood that it was clearly not the same.

Later in the evening, when the grandkids went to the basement to play dodgeball, Molly, Chris, Nora, and I were left looking at the tree. The mood shifted and lightened. It brought back the time twenty-nine years earlier when Molly and I celebrated our first Christmas together and Chris and Nora were visiting. It felt right and good.

Other times while I was with Nora, I was strangely anxious. I kept telling her about the unit. “It’s nice and small: it only houses fifty-two people.” “The staff is very well-trained. They’re first rate.” I repeated myself over and over compulsively.

On the way to the airport, just like in the last five minutes of a therapy session, I returned to the subject of the facility. And I realized what was happening: I wanted Nora’s approval. I wanted her to tell me that it was a good place for her Mom. And, most importantly, that it was OK that I had put her there and not kept her at home longer.

“Nora, I can tell what’s been going on with me over the past few days. I want your permission. I’m still feeling guilty about not keeping your Mom at home.” “You can let go of that one,” she said. “Thank you,” I replied.